The stigma gene

October 8th, 2010 by Ben Goldacre in bad science, genetic nonsense, medicalisation, neuro nonsense | 27 Comments »

Ben Goldacre, The Guardian, Saturday 9 October 2010

What does it mean to say that a psychological or behavioural condition has a biological cause? Over the past week more battles have been raging over ADHD, after a paper published by a group of Cardiff researchers found evidence that there is a genetic association with the condition. Their study looked for chromosomal deletions and duplications known as “copy number variants” (CNV) and found that these were present in 16% of the children with ADHD.

What many reports did not tell you – including the Guardian – is that this same pattern of CNV was also found in 8% of the children without ADHD. So that’s not a massive difference.

But more interesting were the moral and cultural interpretations heaped onto this finding, not least by the authors themselves. “Now we can say with confidence that ADHD is a genetic disease and that the brains of children with this condition develop differently to those of other children,” said Professor Anita Thapar. “We hope that these findings will help overcome the stigma associated with ADHD.”

Does the belief that such problems have a biological cause really help to reduce stigma?

In 2001, Read and Harre explored attitudes among first year undergradute psychology students, with questionnaires designed to probe belief about the causes of mental health problems, and responses on 6-point scales to statements like “I would be less likely to become romantically involved with someone if I knew they had spent time in a psychiatric hospital”. People who believed more in a biological or genetic cause were more likely to believe that people with mental health problems are unpredictable and dangerous, more likely to fear them, and more likely to avoid interacting with them. An earlier study in 1999 by Read and Law had similar results.

In 2002 Walker and Read showed young adults a video portraying a man with psychotic symptoms, such as hallucinations and delusions, then gave them either biogenetic or psychosocial explanations. Yet again, the “medical model” approach significantly increased perceptions of dangerousness and unpredictability.

In 2004 Dietrich and colleagues conducted a huge series of structured interviews with three representative population samples in Germany, Russia and Mongolia. Endorsing biological factors as the root cause for schizophrenia was associated with a greater desire for social distance.

And lastly, more compelling than any individual study, a review of the literature to date in 2006 found that overall, biogenetic causal theories, and labelling something as an “illness”, are both positively related to perceptions of dangerousness and unpredictability, and to fear and desire for social distance. They identified 19 studies addressing the question. 18 found that belief in a genetic or biological cause was associated with more negative attitudes to people with mental health problems. Just one found the opposite, that belief in a genetic or biological cause was associated with more positive attitudes.

These findings are at odds with everything that many people who campaign against stigma have assumed for many years, but they’re not entirely nonsensical. As Jo Phelan explains in her paper “Genetic bases of mental illness – a cure for stigma?”, a story about genetic causes may lead to people being conceived of as “defective” or “physically distinct”. It can create an “associative stigma” for the whole family, who in turn receive new labels such as “at risk” or “carrier”. What’s more, this stigma may persist long after the ADHD symptoms have receded in adulthood: perhaps a partner will wonder: “do I really want to risk having a child with this person, given their genetic predisposition?”

Perhaps it will go further than that: your children, before they even begin to show any signs of inattentiveness or hyperactivity, will experience a kind of anticipatory stigma. Do they have this condition, just like their father? “It’s genetic you know.” Perhaps the threshold for attaining a diagnosis of ADHD will be lower for your children: it’s a condition, like many others, after all, with a notably flexible diagnostic boundary.

Blaming parents is clearly vile. But before reading this research I think I also assumed, unthinkingly, like many people, that a “biological cause” story about mental health problems was inherently valuable for combatting stigma. Now I’m not so sure. People who want to combat prejudice may need to challenge their own prejudices too.

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27 Responses

  1. EnglishAtheist said,

    October 9, 2010 at 12:13 am

    Eye opening, thank you

  2. reprehensible said,

    October 9, 2010 at 1:05 am

    Interesting article.

    However I’m sticking to my prejudice that the mainstream journalist cohort is genetically predisposed towards having less ability to comprehend statistics than the population as a whole. (Even though that’s possibly means giving them the benefit of the doubt undeservedly!)

  3. devin said,

    October 9, 2010 at 1:45 am

    Hmmm… Except that the study isn’t exactly comparable to the situation here. People aren’t being given a psychosocial explanation for ADHD, they’re given no explanation at all.

    I wonder if it might not be simply that of the two explanations, the psychosocial one creates more empathy (this has some appeal, as it involves thinking of the hallucinating man as a person with a history, rather than as a bag of genes).

    I have ADD myself, and in my experience most people don’t know a damned thing about it. The most common talk I hear is people using it as slang for lack of attention or focus, or for out of control kids. A genetic basis may help reduce certain stigmata based in ignorance even if it doesn’t reduce the stigma of being different or disabled. You’re not as likely to think someone is lazy or just doesn’t care or that their parents fed them drugs instead of parenting if you know that they have a genetic disorder.

  4. MicheleB said,

    October 9, 2010 at 3:56 am

    Don’t buy it. Those studies are about major mental illness, mainly schizophrenia.

    ADHD is a different problem. No one is afraid of people with ADHD. It’s apples and oranges.

    Also, don’t know if thinking twice about dating someone who might have mental illness really defines some awful “stigma”. I’ve been around that block. It sucks.

  5. oldandrew said,

    October 9, 2010 at 7:52 am

    “No one is afraid of people with ADHD.”

    Except, perhaps, those of us who are expected to teach children who have been told they are not responsible for their behaviour because it is a medical condition.

  6. Yogzotot said,

    October 9, 2010 at 8:21 am

    Not talking about ADHD as such, but the wider mechanism of psychosocial or biomedical “explanations”: Depending on the situation, you can’t win either way, as people grossly simplify things, even if unconsciously.

    If something hints at mainly genetic causes, people may think (simplified): “It’s genetic, they are born that way, you and they can’t do anything about it. It’s not a choice of their own – which makes them somewhat of victims, but even more so driven by their genetic makeup, and hence unpredictable and cold, biological machines. I should be cautious.”

    If something comes along with mainly environmental causes, people may go: “They were good in nature, I am sure, but they have been made this way against their will. They are victims of their upbringing etc., so deserve my sympathy. However… If this is the case, they now could actively change their environment and ‘make themselves better’. If they don’t manage this, there is probably something wrong with them after all. I should be cautious – and maybe even mad at them for not changing their fate now.”

  7. Yogzotot said,

    October 9, 2010 at 8:26 am

    On a different note:

    To individuals, family and e.g. teachers, a genetic cause may be much more tenable. Then they are not “responsible”.

    To the wider public, a psychosocial cause is more tenable – it appears better manageable. Genetic causes are “weird” and “technical flaws” they don’t know how to deal with.

  8. jamse said,

    October 9, 2010 at 9:34 am

    I too wondered if it was a different type of stigma that they were referring to in relation to ADHD. My assumption was that it meant the belief that it’s “just naughty kids” or “bad parents who can’t/don’t control their kids”.

  9. mesmer said,

    October 9, 2010 at 10:02 am

    I’m reading two things in Bens post. One is to do with stigma, the second is to do with complex situations being given simple explanations. The ‘biology is destiny’ argument is seemingly prevalent when it comes to genetic explanations, but the risk (or simplicity) is to accept these as a fixed given. In the 1980s I used a news article as a discussion point for students. It reported a court case in which a female driver had (successfully) used a defence of PMT in a dangerous driving case. Seen by some as a positive step – others were quick to point out the drawbacks, ie those which could now be used to justify prejudice or stigma on the grounds that such actions were above and beyond the control of the individual. It seems to me that the dominant ideology, certainly in the public domain, is one that seeks out biological explanations.

  10. TwentyMuleTeam said,

    October 9, 2010 at 1:09 pm

    Along with “biological explanations,” the public also wants bread and circuses.

  11. parrhesiast82 said,

    October 9, 2010 at 7:11 pm

    I’d love a biological marker to stop every bad parent claiming that their noxious child has ADHD/ADD.

  12. Delster said,

    October 9, 2010 at 9:07 pm

    I’m amazed nobody has pointed out the problem with that story….that being that 84% of the kids with ADHD didn’t have the markers.

    Finding something in 16% doesn’t show it’s caused by that marker, just that that marker is twice as likely to show up in ADHD affected kids as “normal” kids

    So the whole “Now we can say with confidence that ADHD is a genetic disease and that the brains of children with this condition develop differently to those of other children,” doesn’t quite ring true.

  13. tomknapp said,

    October 9, 2010 at 11:57 pm

    I did my sums on this and (based on 10% of kids having ADHD, but then it is midnight and 10% is a lot easier) someone with this gene has about 18% chance of having ADHD.
    Whilst there is a lot of mis disgosis (I know, I am a teacher), this isn’t a very big proportion.

  14. asmilwho2 said,

    October 10, 2010 at 10:04 am

    I have a relatively rare blood disorder, where the incidence of a particular genetic defect is over 95%.

    I have no trouble here with my doctor telling me there’s a genetic cause.

    Saying things like “Now we can say with confidence that ADHD is a genetic disease” at a level of 16% is to my mind complete bollocks.

    Would any of us start genetic therapy at this level of probability? I don’t think so.

  15. jess said,

    October 11, 2010 at 12:00 am

    Just sticking purely with the “ADHD has a genetic component” issue for now… what I find amazing is that this has been evident for years.

    There are dozens of labs around the world that look at the genetics of ADHD. There have been a few genome-wide association studies, and there have been plenty of candidate gene studies. The research has identified dozens (if not hundreds) of CNVs, VNTRs and SNPs that are more common in individuals with ADHD than the population average. I guess the people that did that research and published those papers just didn’t put out a press release overstating their findings and saying that ADHD is genetic (without mentioning all the other contributing factors), like this Cardiff bunch has done.

  16. Alan Kellogg said,

    October 11, 2010 at 2:16 am

    The question I have is, how were the children raised? Were they raised to focus on what they were doing? Were they trained to become engaged by what they were doing? If the answer is no, then the child would be more apt to become easily disengaged and so more apt to be distracted, to to seek distraction. Were the children taught good study habits?

    If the last question is answered by a “no”, then the child would be more likely to exhibit ADHD than a child who was. In addition, a child with the marker would tend to be a child it is more difficult to teach good study habits, since that child would be more likely to be easily distracted.

  17. parkenf said,

    October 11, 2010 at 2:37 pm

    Yogzotot raised this already, but saying that a genetic cause for ADHD will diminish “stigma” is using a very political and media led meaning of stigma which, as Ben has pointed out, is quite divorced from how people approach their day-to-day decisions and responses.

    We’ve all picked up a Victorian vibe of the deserving and undeserving poor surrounding policy announcements of this curiously illiberal coalition. The assignment of a genetic cause to your condition makes you one of the “deserving sick” – as your condition is therefore entirely beyond your control, and cannot be cast in any way by the manipulators of public opinion as a devious attempt to make yourself the responsibility of the state. It is in this, entirely financial, sense that “stigma” has been reduced, the status of pathetic victim is officially yours.

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  19. speedkermit said,

    October 12, 2010 at 2:20 pm

    This article reminded me a little of a documentary I once saw with John Barrowman (of all people) where he was wrestling with the old nature/nurture question about homosexuality. Obviously he has a vested interest in the question, but it was almost as if he was desperate to find a genetic basis, so as to be able to say “it isn’t our fault”, even to the extent of shameless selectivity about the available evidence (you’d have loved it). Of course, being gay isn’t anyone’s ‘fault’, not least because it isn’t something one ought to be ashamed of, but I suppose the flipside of the ‘nature’ approach is that it implies that you are a slave to your genes rather than the master of them, or that maybe people are looking for an opportunity to absolve themselves of personal responsibility in some area of their lives. Anyway, it’s interesting… I agree with parkenf about the shifting conception of ‘stigma’ and how we perceive it.

  20. danniiboy said,

    October 15, 2010 at 3:45 am

    I suspect that a large part of the “stigma” of ADD/ADHD stems from sensationalist media stories where ADD and, more recently, ADHD have been used as synonyms for “unmanageable child who calls their mother a bitch”.

    The stigma for this is twofold for people legitimately suffering from ADD and ADHD; it unfairly labels them as “unmanageable” in the eyes of others, and it creates an inaccurate image of what ADD/ADHD, thereby delaying diagnosis and treatment. And it’s not only the patients who suffer from this second stigma, it’s some medical practitioners and most friends/family who just don’t grasp the problem.

  21. jazz_the_cat said,

    October 15, 2010 at 1:56 pm

    As a parent of an ADHD child, who is no more unmanageable than any other teenager (but one who is a national merit semi-finalist – sort of the USA equivalent of acing your O-levels – so my wife and I must be doing something right), I find the idea of “just tell them to focus more” somewhat repulsive. It is just like asking a myopic child to “just use their eyes better” instead of giving them glasses.

    Using ADHD as an excuse for bad behavior is not correct either. People with ADHD can and do behave well.

    Proper parenting and teaching techniques involves recognizing that the child will have a great deal more difficulty focusing and then using both behavioral and pharmacological tools. The drugs do work, but they aren’t that pleasant to take. Raising an ADHD child does take a bit more proactive parenting than raising a normal child (whatever “normal” means). My other “normal” child has been a lot easier to raise.

    IMHO ADHD is one of the few examples in neuropharmacology where the molecular mechanism of action is fairly explicitly defined and well understood. Even if these aren’t quite the sole genetic cause, it would not surprise me to find that there is a genetic loading in ADHD.

  22. physicsmum said,

    October 16, 2010 at 4:09 pm

    Thank you jazz!! We like cats too 🙂
    But have also lived through that, and lately our son was diagnosed with Asperger’s also. Now he is in trouble with the law, and the big question at this point is whether it will help or hurt to bring up the diagnoses?

  23. heavens said,

    October 20, 2010 at 5:25 am

    About dating:

    Aren’t inheritable diseases a reasonable thing for a responsible adult to consider before choosing to have kids with someone?

    If you know that a really miserable form of depression runs in a family, or something incurable like Huntington’s, or something nasty like BRCA with a family history of ovarian cancer, then shouldn’t you think that through — both in terms like, “If the worst happens, can I handle having a spouse and two teenagers massively depressed at the same time?” or “What happens to the kids, if she dies from the cancer she’s likely to get?” and also terms like, “Is perpetuating this disease really an act of love?”

    I don’t think that it should be the only factor in life decisions (and the actual likelihood of the genes resulting in death or disability is highly relevant), but absolutely ignoring it seems seriously reckless.

    I know a woman who had six late miscarriages because of her husband’s genetic disorder. The only two surviving babies both have it (autosomal dominant and basically 100% penetrance), had multiple surgeries before they were old enough to go to school, and you know what? Basically 100% of their kids, and grandkids, and great-grandkids, will either die before birth, immediately after birth, or have this disease. While I think they should be as free as anyone else to make their own decisions about their fertility, I’d be sorry if they or their future spouses actually thought that a 75% chance of offspring dying and a 100% chance of them being disabled was such a trivial situation that it merited zero thought.

    And if you must have children, and having disabled children is intolerable to you — then, yes, you really should find someone else, instead of stringing along these two strikingly beautiful young people.

  24. Wid said,

    October 21, 2010 at 12:12 am

    I was very interested to read this post. As someone who does disability rights activism, this is a question I ask myself a fair bit, and I’m gratefull to see some research on the issue. The disability rights movement has sort of moved onto the next dialectical stage, if that’s not too nebulous a way to put it, but this information should still be usefull in informing practical activism.

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  27. vasiln said,

    December 3, 2011 at 11:52 pm

    While I believe that the point to this post is, “Hey, just because it’s obvious doesn’t mean it’s true,” I feel as if it reads like, “More stigma accrues to people with illnesses described as biological,” and I don’t think that follows.

    Of the studies you mention, only one is an intervention. That’s important because there can be another factor that leads to both stigmatization of mental illness and belief in the primacy of organic causes. If you’re having a hard time imagining a situation like this, read MicheleB’s post above. When you date somebody with mental illness, you may be both more likely to describe mental illness in terms of biology (because your ex described it that way, because the popular wisdom is that that leads to reduced stigma) and more likely to report that you wouldn’t date somebody mentally ill (because your ex was mentally ill, and, well, he was full-on crazy).

    There is one study you listed that described an intervention, and I don’t have full access (abstract only). All I can say is that I can imagine possible faults with it.

    I would just advise being careful about this kind of thing, because if Wid (above) is any indication, people use any information they get to decide how to ‘educate’ people about mental illness. This is not some kind of settled issue.

    Besides, the responsibility that we have is not to release information only when it benefits people that are mentally ill, but to tell people everything we know, and in consideration of that, what leads to stigmatization is irrelevant. Are we going to lie to people and say that mental illness has some particular root regardless of what we actually find? Ultimately, the biology vs. psychology, nature vs. nurture arguments are largely outdated dichotomies that we’ll eventually outgrow. (No idea when.)